My name is Kim and I am the proud mother of a beautiful baby boy, Keaton Scott. I am sharing our story in hopes to encourage other mothers to listen to their “inner mama voice” if they have any concerns or worries during their pregnancy. I also want to let other families impacted by congenital CMV know they are not alone.

I can’t remember exactly when we found out we were pregnant with Keaton. I do know we were surprised because our first son was only 11 months old, turning a year old in April 2012. We knew we wanted a second baby, but we didn’t expect it to happen so soon! Regardless, we were beyond happy and excited our older son would have a sibling so close in age. During my pregnancy, I thought everything was normal but looking back there were lots of little signs. I didn’t have any morning sickness, but I wasn’t too worried about that because I didn’t with my first pregnancy either. I was extremely exhausted but thought that was because I had a young toddler I was chasing around plus working part time.

Sign #1: Around 8 or 9 weeks pregnant, there was a strange period of time when I was freezing cold for about 5 days. I was so cold that during my lunch break at work, I would park my car in the sun with the heat blasting and still couldn’t get warm. It was like the flu cold feeling where my bones ached, but I didn’t have a fever. I’m not sure why I didn’t call the doctor. I think I was still in denial that I was even pregnant at this point in time. This is when the doctors think I became infected with CMV…my primary CMV infection.

Sign #2: Every monthly doctor’s appointment came and went without any concerns. At our 20-week ultrasound, we found out we were having a boy! We were so excited we were going to be able to give our older son a brother and life time friend. I imagined them getting into trouble together and keeping me busy, and I couldn’t wait for the challenge. We went into the doctor’s office to go over the ultrasound. There was a note on the ultrasound for him to give the technician a call. He called her and I heard him mention “posterior fossa.” I was so terrified he was going to give us terrible news that I couldn’t even make eye contact with him. He paused for a few minutes after hanging up the phone but mentioned nothing. We came to find out later Keaton’s posterior fossa was measuring at 2.9 and a 3.0 is a red flag. There were other signs in his heart and kidneys when the doctors looked back at his 20-week pictures. I wish I would have had more courage to ask the doctor what that phone call was about at that moment in time.

Sign #3: More monthly appointments came and went. My friends kept mentioning they couldn’t even tell I was pregnant. I had a few friends whose due dates were near mine and I noticed they had bigger bumps than I did. At 24 weeks pregnant, I had only gained about 15 pounds and I didn’t think I showed as much as I did with my first. I mentioned this to my doctor at my 28-week appointment. I thought most women showed more with their second pregnancies, especially with pregnancies so close together. My doctor said to not worry about it, everyone and every pregnancy is different. He said if I was really concerned, we could do another ultrasound, but I chose not to. I wonder if we had scheduled an ultrasound then what they would have found.

Sign #4: I had scheduled a 3D ultrasound at about 29 weeks. Now, this particular company was not in a doctor’s office. It was simply a fun ultrasound to get a picture of the baby’s face, not to do any medical analysis or measurements of the baby. I felt like Keaton wasn’t moving as much as he should be, but I knew I’d be able to see him and hear his heart during the ultrasound. If I heard his heart, I’d know he was ok. During the hour-long appointment, we were not able to get any good pictures of his face. The technician mentioned there just wasn’t much room and not a lot of amniotic fluid. We scheduled another appointment for the next week because the ultrasound company guaranteed a clear picture of the baby’s face. We had the same problems during the next appointment. She said several times during the appointment, “There just isn’t much fluid in there.” This statement combined with the fact he wasn’t moving much caused me to call my doctor’s office. It didn’t make sense to me that a baby at 30 weeks gestation wouldn’t have enough extra room around him when he still had 10 weeks of growing to do.

Sign #5: When I called my doctor’s office, the nurse instructed me on how to do a fetal kick count test. After work the evening of September the 5th 2012, I sat on the couch and tried to count Keaton’s movements for 4 hours. I got up, exercised, drank some orange juice, and did everything the nurse recommended to get him to move, but I couldn’t feel any movements. Sleeping that night was impossible. I kept asking, begging, Keaton to move… but nothing.

The morning of September 6th at 6 a.m., I went through a kick count test again. I tried for 2 hours and still no movement. I called my doctor’s office as soon as they opened at 8 a.m. I told them I was not able to feel any movement after paying close attention since the night before and after trying 2 fetal kick count tests. They instructed me to come in at 10 a.m. I was scared something was wrong, but at the same time kept telling myself I was overreacting and everything was going to be fine with my baby. Myself, my husband and my now 17-month-old all went to the doctor’s office where I was hooked up to the machines for an NST. After an hour of drinking ice cold water and the nurse using a sound machine to try and stimulate Keaton, we were still not able to get him to move. She called my doctor who was on call at Labor and Delivery in the hospital. He wanted me to come straight to the hospital to have an ultrasound. I still wasn’t scared, and kept telling myself everything was going to be fine, my boy was just being stubborn and would show us he was ok during the ultrasound.

When we got to the hospital I was hooked up to the machines again to check his heart rate and do another NST. My doctor came in and seemed concerned. He said he wanted to do the ultrasound because he noticed while watching Keaton’s heart rate that there was not any variation. He had me drink a glass of grape juice before the ultrasound to help stimulate Keaton. He also shook my belly pretty hard, the hardest anyone had ever moved my pregnant belly before, and still no movement. I was wheeled over to the ultrasound room where the technician was ready for me. By this time, my older son was becoming fussy and hungry. The technician said the ultrasound would take over an hour, so my husband took our son out on a walk. During the ultrasound, everything looked fine to my inexperienced eyes. After about a half hour, the technician left because she said she wanted to see if my doctor wanted more pictures. When she came back she emphasized her screening on Keaton’s head. I noticed when she was doing the measurements of his head they were coming up with 26 to 27 weeks on the bottom of the screen.

My doctor came into the room and said, “We’ve got to take your baby out now.” Those words and the expression on his face will never leave my memory. I’ve never seen a doctor look so scared before. He said himself and a doctor from Children’s Hospital in Seattle had been watching the ultrasound live. I asked him why Keaton’s head was measuring so small. He said, “I don’t know, but I do know we need to get him out now to save his life.” He helped me into the wheel chair and told me we were going straight to the operating room. He gave me his personal cell phone and told me to call my husband to let him know what was going on. Within about 10 minutes, I was prepped and on the operating table. I kept praying everything would be ok with my baby. I was so scared because they were going to put me to sleep for the surgery and I wouldn’t be able to see Keaton, my husband, or older son until I woke up.

Keaton Scott was born at 12:55 p.m. on September 6, 2012. He was 31 weeks gestation and weighed 2.2 lbs and was 14.25 inches long. When I woke up, I had so many questions. I was told they were packing Keaton up and airlifting him to the nearest NICU, which was about an hour away. My doctor came into the room to sit down and talk with us. He said the reason they had to deliver him so quickly was because my placenta was not working properly and was letting more blood flow out than in. He said that coupled with the fact that Keaton was unresponsive and was showing no muscle tone made them decide they needed to get him out immediately. His body was shutting down and saving all its energy for his heart. I was told they weren’t sure what was wrong with him, but he had purple spots all over his body. They were worried he had some type of infection because his neck was swollen too.

I finally got to see Keaton for the first time after he was all packed up and ready for his flight at 6 p.m. I later learned it took them so long to pack him up because he was having problems clotting and breathing. I immediately burst into tears when I saw him because all I could see was the top of his head. He was hooked up to so many wires and machines that he was barely visible. The hospital Chaplin came into my room and told me he had been with Keaton since he was born and was worried for our little boy because he was very sick. I didn’t understand this at that moment in time and I didn’t really hear him. My friends and family had been sharing stories of so many stories of 31 weekers and even younger making it. I was sure my boy was a stubborn fighter and he would be fine now that he was out and not having my placenta limit him. My husband drove down to the NICU that evening while I waited to be released from the hospital. The doctors there didn’t have much more information for him when he got there.

The next morning, September 7th, things were looking up. Keaton was taken off the ventilator and we were sure our little boy was going to keep improving day after day. That evening, the NICU doctor and my husband called me. She said he definitely had some type of infection and they were waiting for his and my blood tests to come back. She said they also saw some calcification on his brain. I didn’t know what this meant, but I asked since his brain was still growing it could develop despite this and she said it would. In my mind, my baby was still ok and would beat this.

The next morning, September the 8th, I was released from the hospital and immediately made the drive to the NICU. When I first saw Keaton, I was shocked by how small he was, yet he was beautiful and looked completely perfect to me. I was told I couldn’t hold him yet because he was having trouble clotting and they didn’t want to disrupt the IV’s in his belly. I didn’t let the fact that all I could do was touch him with my hands in his isolette bother me. I was optimistic because I was getting breast milk for him through pumping. I was ready to live in the NICU and help him fight this battle until we could bring him home. That evening, Keaton was having trouble breathing on his own so they had to put him back on the ventilator.

On September 9th, the nurses seemed odd to me. While I was visiting Keaton, I asked the nurse if Keaton was the youngest baby there and she said, “No, but he’s the sickest.” I started looking at the other babies in the NICU for the first time and noticed none of them were hooked up to as many machines. None of their parents had to wear hospital gowns, shoe covers or gloves while visiting their babies. Another nurse mentioned to me, “So they think he has CMV, huh?” I said “They do?” I could tell by her facial expression she had just said something she shouldn’t have to me. The head nurse then asked us if we could sit down and talk. The whole conversation with her is blurry. I remember her mentioning liver failure, pneumonia, CMV, enlarged heart, brain abnormalities and calcification, cerebral palsy, and how his little body couldn’t fight it all. She said his doctor wanted to have a talk with us the next day to see “How far we wanted to take this.” I felt like my heart was being ripped from my chest. Reality hit me hard and I finally understood my baby was really sick and it hit me at once. When I now looked at him, I could see how sick he was and how hard his little body was working to simply breath. My husband and I spent that evening looking up and researching CMV. How is it I had never heard of this before? Was this really our life and was this really happening to our baby? We didn’t sleep a wink that night, we just cried and prayed.

On September 10th, my dad came down to the NICU for the meeting with the doctor at 10 a.m. We wanted someone else there who could help us hear everything the doctors said. The tests had come back and Keaton had CMV. We were told Keaton would not have any quality of life if, and it was a big if, he was to survive his first few months. His whole body was so infected by CMV that it was unlikely he would come through because he was so tiny. After reviewing everything with the doctors and after many prayers, we decided to do comfort care for Keaton and let him and God decide if he would stay with us or not. At 6 p.m., we removed Keaton from the ventilator and we were finally able to hold him in our arms for the first time. Although he was still beautiful to me, I could see how sick he was. He opened his eyes and looked at us as if to say, “Thank you, I love you.” He then closed his eyes and they never opened again. We held our sweet boy for 3 hours while he slept before he peacefully passed in his sleep.

Looking back at these chain of events, I wouldn’t change even one part when I am totally honest with myself. It’s easy to go through the “what ifs” and wish for a different outcome. I do wish there was a different outcome and I still had my sweet boy. What I do know is if the doctor hadn’t taken Keaton out when he did, we may not have been able to meet him and hold him before he left this world. I will forever be thankful I got to meet this amazing boy and hold him in my arms. He impacted more people in his short 5 days than some people do in their entire lives. He has forever changed my life; I now see everything in a whole new light and have so much more appreciation for those I love.

The part I struggle with the most is why most of us never hear of CMV before it does its destruction on our babies. Why did my doctor, who is president at the largest OBGYN practice in my town of 85,000, not know much about CMV? If 1 in 150 children are born with congenital CMV, then why aren’t there pamphlets sitting in our doctor’s offices along with all the other information we are bombarded with? Not only do we need to stop CMV, we need to raise awareness of CMV.

Comments

Thank you for sharing Keaton’s life. My little guy was also born at 30 weeks, and also lived 5 days. I just heard about a friend of a friend who lost a baby to CMV a year ago. I hope I’ll get to connect with her and share your story.